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Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Rascalx2 on
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Thanks, been on 20 mgs xeljanz a day for past 3-4 months and the results I have are definatley from mg increase, have 6 black hairs on my knees, which you know thats where you want it.
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Permalink Reply by Milana on
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Hello Erdem,
Sorry to hear you are facing the same problem with not getting scalp hair from Xeljanz. I hope the increased dosage will kick the start. Please keep us updated on your progress. Wishing you a complete recovery soon.
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Can you take picture of xeljanz you have? The two boxes next to reach other?
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Here is the picture:
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20170720_171156-1.jpg, 1.8 MB
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Hi singh, they are legit I bought them from one of the large pharmacies in Istanbul. They worked very well to regrow my brows and lashes.
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How much does it cost in istanbul & does any pharmacy there support global tax refund ?
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I would suggest getting cortisone injections while you take Xeljanz. This combination helped me tremendously.
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Thank you for your suggestion asp2014. Xeljanz and cortisone injections combination worth trying. The reason I didn't try it before is that cortisone injections stopped working on me before moving on to Xeljanz. I had figured they wouldn't be good for me anymore. But I will give it a try.
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Yes, I thought the same thing. In the past, it would grew some hair but then it would just fall out soon after. When my alopecia really got bad the shots stopped working altogether. This is why I was also hesistant to try the shot, again. But this time, it has worked, really well. Good luck
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Permalink Reply by Suzie on
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This is so disheartening to hear about some people not responding to the Xeljanz. I cannot say whether Xeljanz was the total reason my hair came back or not. I had AA as a teenager, almost 35 years ago and never knew exactly what I had until it came back a few years ago. It suddenly grew back on its over a course of a year or so with no treatment at all. Fast forward to my late 20's, I developed RA (Rheumatoid Arthritis) after my 2nd child. Years after that my hair dresser told me I had a bald patch on the back of my head that was unnoticeable and it eventually filled in. My RA became so bad I was put on biologics over the years (Enbrel, Humira and Orencia). I was on and off of Orencia and that is when my latest bout of AA happened. My hair was shedding like crazy, lots and lots of patches developed. My Rheumatologist told me it was AA, which I never heard of and that is when I got my aha moment....that is what I must have had as a teenager. I didn't remember losing this much hair as a teenager, but it was so many years ago so I couldn't remember exactly. I decided to go see a dermatologist which began giving me injections. What a slow process that was.......after a year, she told me there was nothing more she could do. I was so desperate I told my rheumatologist I wanted to start Xeljanz for both my RA and AA. After being on it for 6 months all of my patches filled in. It actually started filling in somewhat BEFORE Xeljanz, so I can't say if it would have all filled in or not without Xeljanz; if the Xeljanz speeded the growing or if it actually stopped the shedding. That is the million dollar question for me. I continue to take it mainly for my RA but also afraid that if I get off of it, my hair might start shedding again.
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Suzie, thanks for your message. Happy the Xeljanz worked for you. It is indeed frustrating to realize that the most innovative available treatment as Xeljanz, for which I had high hopes, doesn't work with my scalp hair. Its still puzzling to me why the Xeljanz was good for regrowth of my brows and lashes and not for scalp hair.
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